Why I am starting a conversation with my kids about our family’s health history

August 20, 2018 by Shannon Pulaski
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When I was 27, I gave birth to twin girls. They were born exactly two months early. Ten days later, in that same hospital where my daughters rested in the neonatal intensive care unit, my mother was diagnosed with ovarian cancer. I spent my days running between the floors of the hospital visiting my mother and my daughters. One generation up. One generation down. Just two floors apart in that hospital, but more closely connected than any of us understood. Not long after her initial diagnosis we discovered that my mother was BRCA1-positive. Being BRCA1-positive meant that she faced up to a 72 percent chance of developing breast cancer and up to a 44 percent chance of developing ovarian cancer in her lifetime. It also meant that there was a 50 percent chance that she passed this genetic mutation on to her daughter, me.
When my daughters were 4 months old, I decided to undergo genetic testing. My genetic counselor, Justin, spent a lot of time outlining my family history and explaining my risk for developing certain cancers if I also carried the gene mutation. Then, we drew my blood and started the waiting game. Weeks later, Justin called and asked me to come in to the office. My results were in. When I met Justin I tried to make small talk. But my fate was written all over his face. I knew immediately that I, like my mother, am BRCA1-positive.
Back then, my daughters were so tiny that it was not possible to have a meaningful conversation about this diagnosis. But, it definitely shaped our lives going forward. Today, I am blessed with three children, my twins and my son. I often think about whether they have inherited the BRCA mutation I carry. I wonder how I can provide them with a framework for understanding how this genetic mutation has profoundly affected our family’s history. Families with certain genetic mutations face many complex and personal decisions including how and when to share such information with their children. Now, my girls are 7 and my son is 4. My family has many more BRCA obstacles yet to come. There is no doubt that my daughters and my son will have questions.
By creating “Mom’s Genes” and the series of books to follow, I hope to provide them some answers and empower them as health advocates. I believe parents and children need resources to help guide conversations with age-appropriate content so children can understand risk, establish healthy lifestyle behaviors, and develop coping mechanisms. I also believe that as parents we need support and community to help discuss these challenges as they arise. Please join me on this journey and let’s get a conversation started with our children about their family’s health history so that they can grow into educated patients!